Newly Diagnosed with UC, Pregnant, and Overwhelmed

Introduction to Liz:

My Story:

Being raised by a mother with terrible UC, in and out of the hospital, culminating in a scary but successful J-Pouch, I’ve lived my life in fear of one day being diagnosed with UC. Luckily, I’ve been generally healthy up until this year. I’ve had my run ins with digestive issues (Lactose intolerance – I’ve survived on lactaid pills for years; C-Difficile infection after a trip to a 3rd world country and a course of CIPRO; monthly diarrhea with menstruation), but since I never had any blood, we thought I was in the clear since I’m almost 30. I did start experiencing some increased bloating over the past year or so and had started to experiment with a gluten-free diet, which seemed to help, so all in all I thought things were going pretty well.

And then I got pregnant. The pregnancy was planned, and I was healthy going into it. But almost as soon as I saw that positive test, I started having crazy diarrhea and cramps on an almost daily basis… with constipation in between. “Ok” I thought… “maybe I have diarrhea instead of the more common puking”. But then I started bleeding… which I sincerely hoped was hemorrhoids (what have I become… **hoping** for hemmorrhoids?!?)… but I talked to my doctor and decided to consult a GI. They were leery of performing a colonoscopy in my first trimester to look for colitis (given the family history), and equally hesitant to prescribe medicine without a diagnosis (which was fine with me since I was terrified of poisoning my baby) so as long as I wasn’t bleeding profusely, they recommended we wait a few weeks. So I just continued life as best I could for the next few weeks, blaming most of my absence from work on morning sickness (which, lucky me , I was also experiencing).

The bleeding backed off before the colonoscopy, but I was still feeling pretty crappy and they ensured that it would all be safe for the baby, so I went through with it in week 15 of my pregnancy. I was diagnosed with “mild to moderate pan colitis”, and prescribed Lialda (initially 2 pills/day, stepping up to 4/day). They say Lialda is PROBABLY safe for the baby, and although I was very hesitant to take drugs while pregnant, the doctors convinced me that it was more dangerous to the baby if I left my colitis untreated. I asked if i had any chance of healing without medication, and they said “I highly doubt it”. So I am taking the pills.

Since my colonoscopy 2 months ago, I have hardly bled at all. I still have cramping almost every day, occasionally severe, and I have bled 4 times – all after really bad days, blood all at once, and then no blood the next day.

I maintained my gluten free diet until mid-May, when I went on vacation to Spain, and found that eating gluten free and meeting pregnancy restrictions while on vacation in Europe was practically impossible, so I began eating “fresh” gluten containing items, like fresh bread but not packaged crackers. For the most part, this is still the diet I’m following.

My doctor insists that diet cannot cure UC, but that some diets might make me more comfortable… she suggested the FODMAPS diet for decreased bloating/cramping. From all the things I’ve read online and on this site, the SCD, Paleo, and GAPS diets are all highly recommended for helping achieve and maintain remission. Pregnancy guidelines, on the other hand, all recommend tons and tons of fiber containing grains, fruits, and vegetables.

My questions to the UC community:

**Does it help to make some dietary adjustments (say, reducing sugar intake), or do benefits only come with an “all or nothing” approach?**
From what I’ve read about the SCD diet, Elaine Gottschall insisted that the guidelines must be strictly adhered to… but being pregnant and stressed and overwhelmed and working full time with a long commute and a husband who doesn’t cook, I just don’t see myself being able to commit to the crazy amount of time preparing, cooking and cravings that come with the SCD diet. I’m starting to feel that if I want to be healthy, I have to quit my job and become a full time chef… this can’t be true!

**Have you found anything in particular (and hopefully safe during pregnancy) that helps with the cramping?**

**Is there anyone else on this site who is currently pregnant and terrified out of their mind about how the UC and/or medication will affect their baby?**

**Does anyone out there believe they have successfully warded off a post-birth & breast-feeding flare up with diet? Has anyone had a post-birth flare while already on Lialda?”

**How do you deal with all the conflicting information you receive from different websites and doctors?** Two examples:
1. Even my dr agrees that sugar is bad for colitis. But she recommends I take citrucel… which has sugar in it.
2. Probiotics – I read the other day (on the Breaking the Vicious Cycle website) that we should never consume bacteria begining with “Bifid”. Yet, that’s what all of the “clinically proven” probiotics are now… align, activia, etc. Is Elaine’s research outdated? Or are all the new probiotics bad?

I’m sorry I wrote so much! Thank you for taking the time to read my story if you made it all the way through!

Where I’d like to be in 1 year:

written by Liz

Liz

I’m a 29 year old female, diagnosed in April 2012 while pregnant with my first child, attempting to maintain my full time position in an office 90 minutes away without losing my mind or my baby.